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ks•September 2007•

In This IssueImportant LEND Events…Network News…Resources… Events…

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Important LEND Events

AUCD Annual Meeting & Conference 2007Tomorrow is Here Today: The Interrelationship of

Research, Education, Service, & PolicyNovember 10-14, 2007, Washington, DC

Join us for exciting plenary sessions, instructive workshops, informative concurrent sessions, descriptive posters, and

excellent networking opportunities.The LEND Directors will be meeting Monday morning,

November 12, 2007. Visit www.aucd.org for

registration, hotel information, and more!

MCHB Training Branch All-Grantees Meeting65 Years and Counting: The Legacy and Future of MCH

Leadership April 22-23, 2007, Washington, DC

Grantees of the training branch should save the date for this important meeting.

LEND Directors will have their Spring meeting on April 23-24 following this event. Due to the busy schedule of events, there will not be a LEND Discipline Meeting this year.

More information will be posted online soon.

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Network News

New Leadership for Iowa LEND ProgramSuzanne Pearson, University of Iowa LEND

Lenore Holte, PhD has been named the Program Director/Principal Investigator for the University of Iowa’s Leadership Education in Neurodevelopmental and Related Disabilities (ILEND) grant. Dr. Holte will replace Dennis Harper, PhD, who has been named as the director of the University of Iowa’s new R*E*A*C*H program.

Dr. Holte, Clinical Professor of Speech-Language Pathology and Audiology and Pediatrics has been the ILEND Audiology Training Director since 1998 and has been the supervisor of Speech-Language Pathology and Audiology Services at the Center for Disabilities and Development for nine years. She has a wealth of experience with Maternal and Child Health bureau programs, serving most recently as Audiology director for the Iowa Early Hearing Detection and Intervention (EHDI) program and as program chair for the Iowa EHDI conference. Her leadership skills and experience in mentoring students combined with her firm commitment to the goals of the ILEND program make her the ideal individual to carry forward the leadership of this important program. We hope you will take the opportunity to introduce yourselves and join us in welcoming her to this new position.

Allen Crocker to be Awarded 2007 Arnold J. Capute Award Congratulations to Allen C. Crocker, MD, FAAP, the 2007 recipient of the Arnold J. Capute Award! This award will be presented to Dr. Crocker during the Council on Children with Disabilities program, Saturday, October 27th, at the 2007 American Academy of Pediatrics’ (AAP) National Conference and Exhibition in San Francisco. Additional details about the award presentation will be available as the conference nears.

Each year, the Capute Award Committee has the difficult task of selecting only one winner. We would like to formally recognize the nominees for the 2007 Capute Award as it is truly an honor to be nominated: Robert J. Dimand, MD, FAAP; Michael Msall, MD, FAAP; Charles N. Onufer, MD, FAAP; Judy Schaechter, MD, FAAP; and Bruce K. Shapiro, MD, FAAP.Frederick B. Palmer, MD, FAAP, of the Boling Center LEND is the Chairperson of the AAP’s 2007 Capute Award Committee

Jan Moss Honored as One of Top Fifty Women in OklahomaOn September 20, Jan Moss of the OK Center for Learning and Leadership was recognized as one of The Journal Record’s “50 Making a Difference” in terms of leading women in Oklahoma. Jan serves as a Family Advocate at the UCEDD and LEND program. Congratulations, Jan!

Valerie Gortmaker Wins Her Second MarathonKellie M Ellerbusch, UNMC LEND

Kudos to Valerie Gortmaker for winning her second marathon of 2007 in a recent competition in Fargo, North Dakota! Val completed her championship run in 2 hours, 50 minutes, and finished first in the women’s division in a field of over 9,000 runners. This was Val’s second victory of the season having won the Tallahassee marathon in an Olympic trial with a qualifying time of 2 hours, 46 minutes.

Valerie is a LEND Psychology post-doctoral fellow, who also completed her internship at Nebraska’s Munroe Meyer Institute (MMI). She is a graduate of the School Psychology program at the University of Nebraska at Lincoln and completed her training at MMI this summer. Val will be returning to Lincoln, NE, where she has accepted a position with the Lincoln Public Schools. She also plans to remain active in the area of program evaluation where she can put her Masters degree in Statistics to good use by conducting research for Mosaic, an Omaha-based agency serving individuals with developmental disabilities in residential and day programs across the nation.

Lenore Holte, PhD

Jan Moss

Valerie Gortmaker

September 2007 LEND Links • �

Network NewsRemember to Update Your AUCD Online Directory

The directory is becoming a crucial tool for the network, AUCD, federal agencies, and other stakeholders to locate network members for collaborative projects, speaking engagements, committees, etc., based on their areas of expertise. More and more the directory is searched to identify leaders in particular areas; however the search results are limited to the data that you supply.We hope that you will be able to arrange for someone to review and update your Center’s directory information in the AUCD online directory:

At minimum, please make sure that basic contact information (phone and email) for your staff is up to date and that former staff are removed from the directory.Please consider adding additional staff information to your directory, including areas of expertise, discipline, vitas, and photos. Although it is an investment of time, the return on this investment has been substantial.

Instructions for the directory and a directory staff information paper form are posted on the NIRS Resource Page at http://www.aucd.org/template/page.cfm?id=449.

The Central Office extends our appreciation to all of the UCEDDs and LEND programs who have already updated their directories. Please contact Ryan Jesien (ryanj@aucd.org) or Dr. Maggie Nygren (mnygren@aucd.org) at 301-588-8252 if you need any assistance. including finding your Center’s directory password.

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AUCD Announces Fellowship OpportunitySue Lin, MS, AUCD Central Office

AUCD is pleased to announce an exciting AUCD-NCBDDD fellowship opportunity in the “Learn the Signs, Act Early” Campaign through its Cooperative Agreement with the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC.

AUCD is seeking a faculty, staff, current trainee, or recent graduate (within the last two years) candidate from the UCEDD, LEND, and/or DDRC network who is passionate about addressing the issues and needs of children with autism spectrum disorder (ASD) and developmental disabilities. The Fellow will have an intensive experience conducting outreach efforts to the educational community and service provider systems for the National Center’s “Learn the Signs, Act Early” Campaign team. The Fellow will join an interdisciplinary team that is looking at barriers and opportunities for linking different healthcare, child care, early intervention, and public systems through national, regional, and state-based efforts. This is anticipated to be a one-year fellowship. Applicants with strong knowledge and background in disability service systems, public health, and health communication are highly desired. Applicants should have a masters level or higher degree in a health, allied health, or education field; however, other qualified applicants will be considered.

Annual salary is expected to be in the $50,000 - $70,000 range based on education and experience. Applications can be submitted immediately online! Consideration of candidates will begin in October of 2007, and will continue until the search is successfully completed. Find out more about the “Learn the Signs, Act Early Campaign” on the AUCD and CDC websites.

Start date for the fellowship is negotiable with a start date as soon as possible in 2007 or early 2008.

Please share the announcement with potentially interested and qualified candidates at your Center or Program. To obtain additional information, please contact Sue Lin (301-588-8252 ext. 212).

AUCD staff and network members exhibit at 2007 National Conference of State Legislatures (NCSL) conferenceAUCD once again partnered with local university centers to host an exhibition booth at the 2007 National Conference of State Legislatures (NCSL) Annual Meeting. This year’s conference was held in Boston, MA, on August 5-9. The conference drew over 9,000 attendees from across the country, including 1,957 state legislators and 1,642 legislative staff. Kim Musheno and Joe

Caldwell from the AUCD Central Office joined staff from the Institute for Community Inclusion and the Eunice Kennedy Shriver Center to educate attendees about the AUCD Network and UCEDDs, LENDs, and DDRCs in their states. Next year’s NCSL meeting will be July 21-25 in New Orleans, LA.

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Network News

Former New Hampshire LEND Trainee appointed as New Hampshire’s CSHCN DirectorRae Sonnenmeier, PhD, New Hampshire LEND

The New Hampshire Department of Health and Human Services recently announced the appointment of former New Hampshire LEND trainee Elizabeth Collins, RN-BC, MS, as the Director of Special Medical Services for Children with Special Health Care Needs (NH’s Title V program). Liz participated in the NH-LEND Program during the 2004-2005 academic year and received her master’s degree from the University of New Hampshire in Nursing Leadership, with a focus on Health Planning and Advocacy for Special Populations. For her nursing capstone project, Liz reported on “The Impact of Insurance Status on Health Care Access for New Hampshire Youth with Special Health Care Needs.” With more than 15 years of experience as a New Hampshire state employee combined with her leadership training, Liz was the perfect candidate for this position.

Liz has experience working with both adults and children with special health care needs (CSHCN). Prior to her appointment, she worked as a public health nurse coordinator serving as the clinical coordinator for the Concord, NH, Neuromotor Clinic, and providing care coordination for families with CSHCN. Liz also has a wealth of experience working with adults with dual diagnoses, including mental illness and developmental or neurological disabilities.

During her NH-LEND experience, Liz distinguished herself in the areas of research and public policy issues affecting CSHCN. Liz investigated issues related to pain management for CSHCN and completed a meta-analysis of the available literature, which has served as a model for future trainees. In the public policy arena, with staff from Senator Judd Gregg’s office (NH-R), Liz took the lead in advocating for community-based supports and services for individuals with disabilities with staff from Senator Judd Gregg’s office (NH-R). She completed an exemplary analysis of public policies and professional guidelines regarding newborn screening protocols, including their impact on practices in New Hampshire at the time.

Reflecting on the impact of her experiences with the NH-LEND program, Liz noted that as a nurse, she had entered the program with a holistic perspective on working with individuals. The NH-LEND program provided an opportunity to actualize this perspective for CSHCN. Listening to families’ stories, understanding what services they were receiving and what they needed, and appreciating that families are the true champions for their children was critical.

“My job is to make sure the services that families need are available to them, not fitting families into the existing services,” said Liz. She emphasized the importance of a thorough understanding of policy and politics for anyone working in the healthcare arena because “the services available are intertwined with the policies passed by the governing bodies.”

Liz reflected that being a LEND trainee required her to “set aside some of my preconceptions and sit back and listen. To fully participate, I needed to realize that it was not about my past experiences, but about incorporating what I learned and heard into my own body of knowledge. Also, being a LEND trainee gave me the opportunity to do things that I might not have otherwise done on my own. I learned I could get into a wider arena, speak cogently, and meaningfully.”

Liz advises that current and future trainees should “ensure that your body of work within the LEND program be based on your passions. Take advantage of all of the opportunities, especially those to explore and understand policy and politics. As leaders, we all need this understanding to influence the direction of the field. Many leaders state that they are uncomfortable with the title of ‘leader’ and yet we all of the ability to make a difference. That’s what leadership is!”

The NH-LEND program congratulates Elizabeth Collins on her achievement, and we look forward to an ongoing positive relationship with NH’s Title V program.

For more information about the NH-LEND program, visit www.mchlend.unh.edu or contact the Interdisciplinary Training Director Rae Sonnenmeier, PhD at 603-862-0561.

Learning Exchange and Collaboration Between Westchester Institute for Human Development and Puerto Rico UCEDDStarting in September of 2007, the Westchester Institute for Human Development in Valhalla, NY will be including three faculty members from The University of Puerto Rico as trainees in its LEND Program. These new trainees will participate through use of a blended learning methodology that combines distance education with face to face sessions. Trainees will visit Westchester three times during the year to attend LEND sessions in person and at other times will participate via videoconferencing. The Instituto de Deficiencias en el Desarrollo, Centro Universitario de Excelencia (UCEDD) of the University of Puerto Rico is assisting in the management and delivery of this program.

Liz Collins, RN-BC, MS

September 2007 LEND Links • 5

Network NewsSynergy Summer Internship

Janet Willis, MPH, RD, Virgnia LEND

VA-LEND hosted its second Summer Internship in Genetic Counseling and Disabilities in May-July 2007. Two rising juniors from Virginia Union University were selected from the applicant pool and supported by the AUCD Genetic Counseling grant. Christine Gaffney, a psychology major, and Alexandria (Ali) Johnson, a social work major completed the eight-week internship. Activities included participating in weekly genetics clinics, attending grand rounds, rotating through clinical experiences in nine different disciplines, attending a community event with the local Down Syndrome Association, and meeting with a self advocate at her job site in the community. The interns were mentored by VA-LEND genetic counseling students. Each intern completed a paper and presentation on a topic of interest at the end of their training. Their topics were family history and prenatal counseling. Both students will assist with recruitment of interns for the 2008 summer session.

Transitions: A Lifelong Process Oklahoma LEND Core Faculty and Childhood Mentor Address Transition IssuesChuck Roberts, Core Faculty in Self Advocate Issues, Oklahoma LEND

Linda Wilson, PhD., Oklahoma LEND

A unique perspective on transition issues was provided by Chuck Roberts, Oklahoma LEND Core Faculty in Self Advocate Issues, and his childhood mentor, Dr. Tom Tonniges, Medical Director, Boys Town National Research Hospital Institute for Child Health Improvement (Omaha, NE). Chuck and Dr. Tonniges were invited to present at Pediatric Grand Rounds by the Section of Developmental and Behavioral Pediatrics, Department of Pediatrics, University of Oklahoma Health Sciences Center. They also were invited by Oklahoma LEND to present at the Oklahoma LEND Leadership Course. In their presentation “Transitions: A Lifelong Process”, they addressed the challenges of everyone’s role in transition for children with special healthcare needs to the adult healthcare system. Information was provided from two perspectives. The first perspective was from Chuck, an individual with special needs, reflecting on services received as a child as well as those received through his transition to adulthood. The second perspective was from Dr. Tonniges who provided services for Chuck as a child and then reconnected with him as an adult. Both Chuck and Dr. Tonniges shared how each was impacted by the relationship and subsequent life decisions to some extent were influenced by the experience with the other. “This was a full circle experience for me first receiving services from Dr. Tonniges and now becoming a colleague within the developmental disabilities arena,” stated Chuck. An added dimension for the Oklahoma LEND Leadership Course presentation was the attendance by Chuck’s parents, Dick and Mary Roberts. They offered parent-family perspectives on Chuck’s transition from childhood to adulthood that gave the presentation additional meaning.

In addition to serving as Oklahoma LEND Core Faculty in Self Advocate Issues, Chuck Roberts is a Project Assistant in the Division of Rehabilitation Sciences, College of Allied Health, University of Oklahoma Health Sciences Center. The powerful information that Chuck shares about various aspects of his life resulted in an invitation by the American Physical Therapy Association (APTA) to be the first Self Advocate to present at their national conference. That presentation focused on the effect of therapy on self determination. He presented with Lorrie Sylvester, a former Oklahoma LEND Core Faculty in Physical Therapy. For more information about Chuck, contact him at chuck-roberts@ouhsc.edu or at (405) 271-3625.

Left to right: front row: Alexandria Johnson, Christine Gaffney. Back row: Janet Willis, Nora Alexander, Joann Bodurtha, Martha Thomas, and Anthony Madu.

Chuck Roberts and Dr. Tom Tonniges

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Network News

New Employees at Virginia LENDJanet Willis, MPH, RD, Virginia LEND

Virginia LEND welcomes two new faculty members who joined our project during the summer months. Rachel Valenti is a new Family Specialist/ Family Faculty. She brings many skills, talents, and experiences to LEND. In addition to being an active mother of a child in elementary school, she works on projects at the Partnership for People with Disabilities, provides training in the community, and is the founder and director of a photo documentary and civic engagement intitiative to promote inclusion of people with disabilities in their own communities. Marie Anzalone, DSc, OTR, FAOTA is our new core faculty member in Occupational Therapy. Marie has been at Virgnia Commonwealth University for two years and has worked with Virginia LEND as a guest speaker and participant is classes and leadership seminars. She has experience working with the LEND program at the Rose Kennedy Children’s Evaluation and Rehabilitation Center in the Bronx, NY. Her areas of interest include sensory integration, infant play, and neonatal outcomes.

CATCH Residency Training Grants: 2008 Call for ProposalsThe Community Pediatrics Training Initiative (CPTI) is teaming up with the Community Access to Child Health (CATCH) Program for the 2nd year to provide a grant opportunity targeting pediatric residency training programs. The mission of this program is to provide support to residency programs to build sustainable opportunities for residents to gain experience working on community-based child health initiatives that increase access to medical homes or specific health services not otherwise available. Grants up to $12,000 will be awarded on a competitive basis to pediatric residency programs that submit proposals to plan and implement community-based child health initiatives as part of the training curriculum over the course of 16 months. A pediatric faculty member must oversee the project and provide mentorship for residents participating in project activities.

The 2008 Call for Proposals and Application is now available online at http://www.aap.org/commpeds/CPTI/Opportunities.htm. Proposals are due by no later than 4pm Central on November 16, 2007. For more information, please send questions to cpti@aap.org.

NH-LEND Trainees Advocate for Autism in WashingtonVision and Voice Newsletter, July-August 2007

The number of children diagnosed with autism has risen dramatically in recent years, from 1 in 10,000 in the 1970s to 1 in 150 today. Because of this trend, autism has become a topic of significant public interest, seeing coverage in the news, on talk shows, and even in the halls of Congress. Our government has made strides toward addressing the trend, proposing additional resources be allocated for autism research, screening, early detection and intervention, and for support systems. These funds have been authorized by not yet appropriated.

Members of the New Hampshire Leadership Education in Neurodevelopmental & Related Disabilities (NH-LEND) training program recently had the opportunity to help educate members of Congress regarding the significant and extensive needs of children with autism and their families for services and more coordination among agencies and providers.

While attending the annual Disability Policy Seminar in Washington, D.C., the trainees had the opportunity to speak with Senator Judd Gregg’s staff regarding their experiences the needs that they have witnessed in their work and training programs.

“It was a lot of work to prepare our statement,” said Trish Cox, NH-LEND trainee, “but we chose to address these issues because of the strong personal experiences we’ve had.”

NH-LEND trainees participate in the Seacoast Child Development Clinic, an inter-disciplinary evaluation service for children with developmental disabilities, including children with autism spectrum disorders.

“Having firsthand experience with children who experience autism and their families has made a big impression on the group,” said Rae Sonnenmeier, UNH clinical assistant professor and NH-LEND coordinator. “I thought they did a fabulous job of identifying key points and telling a cohesive story. This trip was critically important to the trainees’ understanding that they can have an effect on public policy.”

To learn more about the Seacoast Child Development Clinic, visit www.seacoastclinic.unh.edu.

September 2007 LEND Links • 7

Network NewsMCH Leadership Education in Adolescent Health (LEAH) Training

Programs - August, 2007Adrienne Goncalves, LEAH Coordinator, Harvard

The seven MCH Leadership Education in Adolescent Health (LEAH) training programs provide interdisciplinary leadership training in 5 core disciplines (medicine, psychology, nursing, nutrition, and social work). The training prepares health professionals for leadership roles in clinical care, research, training, advocacy, and administration with the goal of improving family- and youth-centered, community-based care for adolescents, and enhancing the capacity building with Title V programs. The LEAH faculty and fellows also provide Continuing Education and Technical Assistance. Although each program has special areas of focus, the LEAH programs work together to improve the health status of adolescents, promote quality care, eliminate health disparities, and achieve the Healthy People 2010 Adolescent Objectives through partnerships with state and local health, educational, social service, and mental health agencies, professional organizations, providers, youth, families, and community organizations.

The grantees 2007-2012 are:Baylor College of Medicine LEAH Program

Albert C. Hergenroeder, MD: (832) 822-3658; alberth@bcm.edu Boston/Harvard Medical School LEAH Program

S. Jean Emans, MD: (617) 355-7170; jean.emans@childrens.harvard.edu Indiana University LEAH Program

Donald P. Orr, MD: (317) 274- 8812; dporr@iupui.edu Johns Hopkins LEAH Program

Hoover Adger, MD, MPH: hadger@jhmi.edu University of Minnesota LEAH Program

Michael Resnick, PhD: (612) 624-9111; resni001@umn.edu UCSF Adolescent Medicine LEAH Program

Charles E. Irwin, Jr., MD: (415) 502-2067, patelt@peds.ucsf.edu University of Rochester School of Medicine

Richard E. Kreipe, MD: (585) 275-7844; richard_kreipe@urmc.rochester.edu

Some examples of Innovations among the LEAHs:Chronic Illness and Disability Transition from Pediatric to Adult-based Care Conference – This two-day CE conference, hosted by the Baylor LEAH and now in its eighth year, is applicable to primary and specialty care practices and provides an interdisciplinary perspective on how teams can facilitate the transition from adolescence to adulthood in healthcare. Indiana Coalition to Improve Adolescent Health – The Indiana LEAH program, in conjunction with the Indiana Department of Health, has taken a leadership position in creating the Indiana Coalition to Improve Adolescent Health which includes representatives from more than 20 organizations and agencies. Their mission is to empower adolescents (10-24) to choose lifestyle behaviors to improve their quality of life and to address their unique health needs. The Coalition has a long-term goal of developing and implementing a state health plan for adolescents. Issues in Adolescent Health – The Indiana LEAH has developed this 3 hour graduate course in the School of Nursing for all nursing students enrolled in the Pediatric Nurse Practitioner program. It uses a seminar format to survey key issues in adolescent health, such as physical and psychosocial growth and development, teenage pregnancy, HIV/AIDS, substance abuse, and violence and abuse. Findings from evidence-based practice and major theoretical perspectives are employed to formulate recommendations for clinical practice, future research, and policy. High School Student Summer Internship Program in Biomedical and Health Sciences – The UCSF LEAH sponsors a summer program to increase the number of underrepresented youth who are committed to and well positioned for college, as well as careers in biomedical, behavioral, or health sciences. The specific aims of this eight week program are to provide the interns hands-on exposure to scientific research, connect them with mentors, and help improve applications for successful college admission. The interns are assigned a research project and are involved in every aspect, including defining their research question, designing experiments, collecting and analyzing data, and creating a final presentation. Community Asthma Initiative (CAI) – The Boston LEAH with funding from philanthropy and a Healthy Tomorrows grant provides services to children and adolescents with asthma from 5 urban, poor neighborhoods. CAI provides nurse case management with an individualized plan, asthma education and teaching, medication management, access to care, connection to primary care providers, allergy evaluation, insurance, housing, and community resources, home visits, environmental assessment, and integrated pest management. Patients have had a significant decrease in ER visits due to asthma, hospital admissions, and missed school days after 6 months in the program compared to the 6 months prior to enrollment.

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Network News

Center for Young Women’s Health – The Boston LEAH in collaboration with the Division of Gynecology created the Center for Young Women’s Health with a goal of empowering girls to learn about their health and to provide resources to teens, families, health professionals, and educators. The website: www.youngwomenshealth.org (140,000 visitors/week) has 150 health guides and monitored chats on many health issues affecting adolescent girls. The peer leaders provide resident training and community outreach and have given over 40 community presentations on health issues.Fellows College – The UCSF LEAH has provided leadership for a Fellows College, instituted in 2004 to help assure academic success for ACGME fellows at UCSF Department of Pediatrics. The fellows participate in the program with about 60 other subspecialty ACGME fellows. During each year of their three year fellowship, they receive guidance and mentorship to maximize their education, research, and individual professional development. This program includes a three year curriculum with rotating topics and a graduated skill building program. LEAH Process Portfolio – The Baylor LEAH created a Process Portfolio to trainees help achieve specific clinical, teaching, research, administrative, and public health objectives. The Portfolios are used in on-going and yearly evaluations. More than 95% of the components have been achieved by BCM LEAH trainees in the last 10 years.Texas Children’s Hospital Kids Fun Run – This event promoted by the Baylor LEAH is a 1.8 mile, non-competitive race intended to increase physical activity in elementary and middle school students. In 2007, there were 3,289 participants including families and youth and a race for children and youth with special health care needs. www.texaschildrenshospital.org/funrun Booking It in the Waiting Room – Many urban youth do not own books and have not made reading a habit. The Boston LEAH created a project two years ago to provide to teens in the waiting room free books which are age appropriate and written by diverse authors. The response has been extraordinarily positive. University of Minnesota Summer Institute – Under the leadership of the Center for Adolescent Nursing, School of Nursing (and co-sponsored by the UMN Prevention Research Center, the Konopka Institute, and the Minnesota Department of Education), the annual Healthy Youth Development Summer Institute, now in its 13th year, provides a 4-day intensive learning experience focused on effective strategies for promoting healthy youth development. The Institute includes direct application of a variety of teaching-learning strategies that participants can then utilize in their respective settings. Community Adolescent Health Training Initiative – The Rochester LEAH has created a curriculum to train MCH professionals in community adolescent health, modeled after the Community Pediatrics Training Initiative that originated in Rochester, and is now based at the American Academy of Pediatrics in the Community Pediatrics unit (www.aap.org/commpeds/CPTI/ ). After being piloted and modified as necessary based on evaluation feedback, this curriculum will be made available to other communities.Assets Coming Together (ACT) for Youth – For the past seven years, the Rochester LEAH has been involved in positive youth development (PYD) activities in New York State, with special focus on training and evaluation. This collaborative effort, which includes partners at Cornell University and its Cooperative Extension in New York City, the NYS Center for School Safety, the NYS Department of Health, the AIDS Institute, and 12 Collaboratives for Community Change statewide, applies PYD as a public health strategy to address the 21 Critical Health Objectives for youth in Healthy People 2010. These efforts resulted in the publication of a special supplement to the Journal of Public Health Management and Practice (www.health.state.ny.us/community/youth/development/journal_supplement.htm) and a plenary session at the AMCHP (2007).

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resources

www.mchb.hrsa.gov/timeline: MCH TimelineMCH Timeline: History, Legacy and Resources for Education and Practice (http://www.mchb.hrsa.gov/timeline/) traces the history of maternal and child health in the US, provides in-depth modules on topics such as MCH 101, MCH Systems of Care, Infant Mortality, and MCH Performance and Accountability, and allows you to search for topical areas of interest. MCHB hopes that the site will be used as an orientation tool for those new to the MCH profession, for grantees of the Maternal and Child Health Bureau, and MCH students, including LEND trainees. Those with experience in the field will find it a rich resource and a source of inspiration. This site will be continuously updated. Planned enhancements include: interviews of MCH leaders about historical events, links to digitized historical documents in the MCH Library, and additional in depth modules. Please contact Laura Kavanagh, lkavanagh@hrsa.gov, with any suggestions.

10 • LEND Links September 2007

resourcesCDC Announces Supplement to PediatricsA supplement to the September issue of Pediatrics contains findings of a 2006 Workgroup Meeting on Use of Family History Information in Pediatric Primary Care and Public Health in Atlanta, Georgia. The meeting was sponsored by the National Center on Birth Defects and Developmental Disabilities, and the Centers for Disease Control and Prevention. The supplement includes information on such topics as:

Linking family history in obstetric and pediatric care Assessing risk for genetic diseases and birth defects in pediatric primary care Utility of family history reports of major birth defects as a public health strategy Using family history to help detect children at risk for diabetes and cardiovascular disease

For access to the Pediatrics supplement and more information about the workgroup meeting, including a meeting agenda, go to www.cdc.gov/ncbddd/bd/family_history.htm.

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CDC Announces New Research GuideCDC is pleased to announce the publication of Advancing the Nation’s Health: A Guide to Public Health Research Needs, 2006-2015 (formerly known as the Health Protection Research Guide, 2006-2015 and referred to as the Research Guide). The Research Guide is a comprehensive public health research compendium developed by CDC scientists and external partners through extensive public engagement. We hope you find this to be an invaluable tool and that you will help us in our efforts to keep this a dynamic resource that reflects the priority research needs of public health. If you have any questions, please contact Dr. Jamila Rashid, Research Agenda and Promotion Team Leader, Office of Public Health Research, CDC at 404-639-4621 or via email JRashid@cdc.gov. You may also email staff in the Office of Public Health Research, CDC at ResearchGuide@cdc.gov.

University of Florida PPC Announces Release of Pediatric Asthma StudyA comparison of parent and provider beliefs about asthma in children. Pediatric Asthma, Allergy, and Immunology

Susan Horky, PhD, University of Florida

Abstract: The purpose of this study was to investigate the asthma-related beliefs and locus of control held by parents of pediatric asthma patients and to evaluate how the parents’ beliefs compare with those held by health care providers. Items from three validated questionnaires regarding asthma beliefs, locus of control and parent satisfaction were administered to a convenience sample of parents of children with asthma attending the University of Florida Pediatric Pulmonary Clinic. Provider questionnaires were placed in the division mailboxes of healthcare providers and were returned anonymously. Surveys were obtained from 112 parents and 14 providers. Parents believed less than providers that asthma was a chronic illness, but more than providers that asthma interfered with their children’s lives. Parents believed more strongly than healthcare providers that providers, fate and God played stronger roles in their child’s life. Paradoxically, parents emphasized certain aspects of providers’ control and abilities more than providers themselves did. These findings help explain why parents may not adhere to treatment recommendations and provide target areas for intervention.

The full article may be obtained at: http://www.liebertonline.com/doi/pdf/10.1089/pai.2005.032?cookieSet=1

VA-LEND Produces New Virginia Medicaid Waivers GuideElaine Ogburn, BS, Virgnia LEND

Co-written by Jessica Cann (2006-2007 VA-LEND trainee) and Elaine Ogburn and published in July 2007, “Virginia’s Medicaid Waivers for Persons with Disabilities, Their Parents, and Caregivers” is available on the website of VA’s Partnership for People with Disabilities at: http://www.vcu.edu/partnership/valend/MEDICAID%20WAIVERS%20GUIDE%20rev2_7_07.pdf . It is also available on the website of the Virginia Department of Medical Assistance Services and on AUCD’s website.

This guide focuses on five of the waivers currently available in Virginia:Mental Retardation/Intellectual Disabilities: The (MR/ID) Waiver, Day Support Waiver, Individual and Family Developmental

Disabilities Support (IFDDS or DD) Waiver, Elderly or Disabled with Consumer Direction (EDCD) Waiver, Technology-Assisted (Tech) Waiver. In addition, there are two other home-and-community-based waivers, the HIV/AIDS Waiver and the Alzheimer’s Assisted Living Waiver.

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eveNts

Boling Center to host Webconference Workshop on Intervention and Prevention

Lee Shelly Wallace, MS, RD, LDN, FADA, University of Tennessee LEND

The Boling Center for Developmental Disabilities at the University of Tennessee Health Science Center will host a new two-day interactive Webconference Workshop on intervention and prevention of overweight and obesity in children and adolescents on March 13-14, 2008. Building upon a successful distance learning program, the 2008 Workshop will increase the number of local sites that can interact with the speakers and participants at the other sites during the live Workshop.

The 2008 curriculum will examine topics such as the economic cost of obesity as a public health problem, health disparities, community leadership, poverty and obesity, school wellness policies, model intervention programs, and integrating evidence-based research into best practices in the community. The curriculum will be presented in four modules, each providing two to three hours of continuing education credit for professionals working with children, adolescents, and their families, in public health and educational settings. Each local site will have opportunities to incorporate and discuss local issues centered around the module’s theme.

An announcement and basic information are posted on the Boling Center’s website: www.utmem.edu/bcdd . Further information about topics, speaker bios, local sites, and registration will be posted as available, with complete registration information available later this fall.

October 1st is Child Health DaySponsor a Child Health Event Throughout the Month of October for the Children and Families you Serve Child Health Day is an opportunity to spread the word about the importance of preventing illness and injury for the Nation’s children. On October 1 — Child Health Day —the Health Resources and Services Administration will join with the American Academy of Pediatrics to raise awareness about the many ways we can all help to build a healthier, safer, brighter future for every child. This year’s theme Building A Bright Future Through Preventive Health focuses on promoting 10 important areas of child health: Family Support, Child Development, Mental Health, Healthy Weight, Healthy Nutrition, Physical Activity, Oral Health, Healthy Sexual Development and Sexuality, Safety and Injury Prevention, and Community Relationships and Resources. Learn more about Child Health Day by visiting http://mchb.hrsa.gov/childhealthday/.

12 • LEND Links September 2007

LENDLinksEditor

Crystal Pariseau, AUCD LEND Coordinator, cpariseau@aucd.org.

SubmissionsItems of interest to LEND programs may be submitted for consideration to cpariseau@aucd.org. Items should be

no longer than 250 words. Electronic copies of pictures are encouraged.LENDLinks is published by the Association of University Centers on Disabilities (AUCD), 1010 Wayne Ave., Suite

920, Silver Spring, MD, 20910 and is supported in part by HRSA’s Maternal Child Health Bureau (MCHB). Current and back issues of LEND Links can be found on the AUCD website at: http://www.aucd.org/LEND/

newsletter.htm.Copyright AUCD. All rights reserved.

Permission is granted to forward this entire newsletter, with all information intact, by e-mail to MCHB training grantees, faculty, staff, trainees and interested parties for personal or educational use only. Permission is also granted to print this newsletter for personal or

educational use. All other uses of this material require permission from the publisher.